Today, April 12, marks the 6-year anniversary of my son’s passing. Nathaniel was 21 yrs old when he died from Duchenne Muscular Dystrophy (DMD) a progressive deteriorative condition that caused him to spend most of his life using a wheelchair.
There is no cure for DMD, so I always felt glad that he lived in a day and age where he could have maximum independence through use of a motorized wheelchair. I also felt grateful that he lived in an era when the American Disabilities Act became the law of the land so that he was able to physically partake in life in a way prior generations of boys with Duchenne (it affects only males) could not.
However, when the ADA was passed in 1990, religious institutions were exempted from the requirement to make their facilities wheelchair-accessible because it was felt that the costs involved would be an unfair burden. I remember a time when Nathaniel was given the honor of holding the baby at my nephew’s bris. The mohel was very touched that Nathaniel was given such an honor and later went over to my husband and told him a story about an incident that took place a few months earlier. The mohel said he was on the board of his local synagogue when the decision was made to renovate the building. A discussion ensued where one board member stood up and said he knew of an architect that would help keep costs down by avoiding adherence to ADA specifications. The mohel was shocked at this attitude and spoke up, saying how the United States passed a “midat tzedek” (a righteous law), and here this board was looking at how to avoid it. The mohel said he was the lone voice in the room.
Now, 23 years after the passage of the ADA, many of our synagogues still have not made their facilities wheelchair accessible, relying on the grandfather clause that enables them to avoid the law’s accessibility requirements. Even though there have already been more than two decades for planning and evaluation, our religious institutions’ reliance on their grandfathered status has caused many not to deeply consider complying with the law. Perhaps the disability community and its advocates should begin a campaign to force action on this issue? Perhaps religious institutions should be given 5 years to develop an accessibility plan? And then 5 years to execute it? One can even imagine the billboards of people in wheelchairs with placards reading “Equal Access to G-d.”
But the community might need carrots as well as sticks. I understand that this can’t all be dropped in the laps of synagogue boards. Perhaps we can raise funds for ADA expert architects to assess our religious institutions and recommend solutions. Or try to create an architectural consortium where we solicit architecture firms to give pro bono work to one religious institution at a time. Perhaps the community and or a group of funders could raise a matching fund to help defray the costs. With some communal effort, change can happen.
I think the time has come to provide an exit ramp for the ADA grandfather and an entrance ramp for people like Nathaniel.
Shelley Richman Cohen is the founder and program director of The Jewish Inclusion Project, which conducts inclusion training programs for rabbinical students.